MEA initial reaction to latest PACE Trial results on recovery | 31 January 2013


Initial reaction from Dr Charles Shepherd, Medical Adviser, The ME Association:


It is really quite bizarre to find that there is absolutely no data whatsoever in this paper on what most people would regard as three objective markers of recovery:

1 a return (or ability to return) to full time meaningful employment or education

2 no longer claiming any DWP sickness or disability benefits

3 an estimation of how far someone can walk

Just as surprising is the absence of any discussion on the use of benefits as a marker of recovery along with the very unsatisfactory reasoning given in the paper (on page 6) for not using employment status or an objective measure of activity levels:

The main limitation of this analysis is the absence of a generally agreed measure of recovery. We addressed this by using multiple domains of health and disability. The domains chosen and the criteria for recovery on each were defined before we undertook the analysis. Alternative domains could have been used, such as return to work or objective measures of physical activity. Return to work is not, however, an appropriate measure of recovery if the participant was not working before their illness and is influenced by other factors such as the job market. Objective measures of physical activity have been found previously to correlate poorly with self-reported outcomes (Wiborg et al. 2010), which may be related to the finding that activity patterns in CFS patients are heterogeneous, with only a minority being pervasively passive (van der Werf et al 2001).

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